HEALTH; End of Life: An Attitude Adjustment

By DEBRA WEST

Published: October 10, 2004

ALBERT BABILOT does not see hospice care as a last resort. True, he signed on for the services when his mouth cancer was beyond treatment, when he withered to 116 pounds and when his children felt overwhelmed watching his pain and suffering. True, his days are soon likely to end.

But since February, when his oncologist recommended that a hospice program was a good option for him, Mr. Babilot has come to think of a hospice program as a last gift.

Mr. Babilot, an 86-year-old former marine and retired engineer, is one of an increasing number of people who seeks hospice care at the end of life. Though the number of hospice patients has risen sharply in the last five years -- up 27 percent in Westchester County, which mirrors the national trend -- experts say far more people could benefit from the variety of hospice services if the stigma of ''giving up'' didn't keep them from seeking help and if the eligibility requirements for Medicare were broadened.

The increase in the number of hospice patients is due in part to educating more doctors and nursing homes about the service, said George Batten, executive director of Hospice and Palliative Care of Westchester in White Plains, the organization providing services to Mr. Babilot.

''Hospice is not only about relieving pain, which many doctors think they can do as well in a hospital,'' said Bruce Jennings, a senior research scholar at the Hastings Center, a medical ethics research group in Garrison, who is co-author of a 2003 study on access to hospice care. ''Hospice is about relieving suffering. It's about healing relationships with family members, about reconciliation with death and having your fears eased.''

Patients who enter a hospice program can receive services either at home or in a hospital or nursing home. Typically, aggressive medical treatments are stopped but medicines are routinely administered to ease pain and to improve the quality of life. In addition to nursing care and the daily services of a home-health aide, hospice patients can be given massages, acupuncture or back rubs. They also receive visits from social workers who try to help them express their feelings and review their life experiences and from spiritual counselors who try to help patients prepare for death on whatever terms the patient desires.

''Hospice gives patients the time to say four things to their family,'' Mr. Batten said. ''Thank you, please forgive me, I forgive you and goodbye.''

In the last year, Hospice and Palliative Care of Westchester, only one of five hospice programs in the county, increased its average number of patients by 50 percent to 75 patients a day. The percentage of cancer patients has decreased to 48 percent, and the program now routinely cares for patients with Alzheimer's disease, cardiac problems, lung diseases and failure to thrive, a diagnosis given to the very old whose organs seem to shut down simply from age.

The average length of stay for patients at Hospice and Palliative Care of Westchester is 52 days, up from 48. But its statistics buck the national trend of people being referred later in the course of their illness, which often doesn't give patients enough time to get the social, spiritual and emotional benefits of a hospice program, Mr. Jennings said.

Often it is the fear of facing the inevitable that keeps patients out of hospice care till the last days, Mr. Jennings said. ''In some ways, hospice is looked at as a death sentence, as giving up,'' he said. ''It's viewed negatively. Patients sort of think that if they ask for hospice, they are accusing their doctor of failing. So they are reluctant to bring it up. Physicians sometimes view hospice as abandonment.''

IN some cases misunderstandings prevent people from seeking a hospice program. ''Patients often don't realize that there is continuity of care,'' he said. ''They can maintain their own doctor who will work with the hospice.''

A side effect of the delay in entering a hospice program is the economic toll on the hospice agency. Insurers pay a hospice agency a flat daily fee, but the most expensive time for the agency is in the early days of treatment, when many different and costly services are required. Hospices, which are typically nonprofit agencies, only recoup their costs later in the course of treatment when patient's pains and needs are under control and they require fewer services, Mr. Jennings said. Still, even being at home with family at the end of life can be an improvement in the quality of death, Mr. Batten said.

''In most of the 20th century, you had people being born and dying in institutions,'' Mr. Batten said. ''We have a whole generation of people who have never been in the presence of death. But, the same way baby boomers changed the way maternity care is delivered in this country from a sterile hospital setting to a birthing center, they are changing the way we care for the dying. We're going back 100 years. Then you had several generations taking care of dying grandparents at home.''

Hospice programs were pioneered in the United States in the 1970's, primarily as a way of easing cancer patients' pain, Mr. Jennings said. In 1984, Medicare began paying for hospice services for people who had a life expectancy of six months. New York State Medicaid followed with hospice payments in 1990 and most private insurers began paying for hospice services in the 1990's, Mr. Jennings said, but they largely adopted Medicare's six-month definition.

A prognosis of six months to live is commonly made with cancer patients, but because it is more difficult to predict in patients with other ailments like heart disease or Alzheimer's, the lack of precision often means patients who could benefit from hospice services are not referred to one, Mr. Jennings said.

Patients can remain in hospice care for more than six months, however, as long as their cases are reviewed periodically and each time they are deemed to have six months to live.

That is the case with Mr. Babilot, who has been in the hospice program for about eight months. When he entered the program, Mr. Babilot moved from Monticello to live with his daughter and son-in-law, Carol and John DiForio, in Mamaroneck. For months before he joined the program, children and grandchildren came from as far away as Florida to take turns caring for him and driving him to his daily radiation treatment. They watched him get sicker and became exhausted themselves until Mr. Babilot's oncologist recommended hospice care.

''It's such a relief,'' said Mrs. DiForio, who works full time as bookkeeper. ''I would never put him in a nursing home. Here I know he eats well. He's got a phenomenal appetite and we always have a fresh meal. Plus, my husband and I can have a life. We have a home health aide four hours a day and we can get out for a while to go shopping or just get a break.''

Mr. Babilot receives pain medication and blood cell enhancers at home from his nurse, Peter Jaskow. Mr. Babilot's doctor is still in charge of his care, but he works in conjunction with the hospice agency's medical director. Besides medicine, massages and acupuncture, a counselor goes to read the Bible and pray with Mr. Babilot, who is Presbyterian.

''I do believe in miracles,'' he said, his eyes glistening. ''I'm not going to tell you about them, but I do believe in miracles.''

Photo: Albert Babilot, who is among the increasing number of patients turning to hospice care, was visited at his Mamaroneck home by Mary Ellen Summerville, a social worker with Hospice and Palliative Care of Westchester. (Photo by Susan Farley for The New York Times)